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Author
Topic: When Do You Ditch, "Wait and See?" (Read 5424 times)

At what temperature do you go to the doc or hospital? Or, do you have other criteria, even if yours was 104? I began feeling just awful last night. During the day, I was feeling very good. On the way to this fall festival, I began getting the chills, with my face burning up, but my fingers cold. We parked; I was trying to be a trooper. Walking just made me feel worse. My partner, Brian, noticed my finger nails looked..not right. I wondered whether this way anxiety, but this was different. About the odd color nails, I thought probably from my fingers being ice cold. Brian said we are leaving now. I got a coke on the way out, because my sugar felt really low.

I have been tracking my calories, but still allow myself like 1,500. So, I'm not starving myself. However, I will go long periods between lunch and dinner without eating, so I can save the calories for dinner, and then a treat before bed. I have lost about 6 pounds, in the last three weeks. Unless a coincidence, it seems when I began to cut calories and loose weight last summer, I also began having worse labs and feeling worse. We checked my sugar at home. It was 82. It is normally higher than that on blood labs--actually usually around 99. Although, I had eaten lunch when getting labs done. My brother's partner, who is a doc, came over to check me out. He said if my sugar was only at 82 after drinking a coke, then it was probably much lower.

To my main point, my temp has been fluctuating up to 102.9. During the night, it fell to 99.6. But, it is back to 102.3. My head is aching so bad. It feels like if I sneezed, I would blow out an artery. I feel weak and dizzy, but I am writing this. My eyes are having a hard time focusing on my IPad. So, I think over 103 is time to see someone?? I don't have cough, sneezing, or anything like that. Not being on meds, it does worry me. I had a wait and see attitude last time, when I got really sick. I know everyone gets bugs. So many neg friends are always posting from the ER.

I know some will wonder why I'm not on meds yet. Some may remember a couple off labs I posted here, from the summer. I met to go over the new med options. I had originally planned on Truvada, Reyatz, and Norvir. Now, I'm thinking Complera. I had planned to get another set of labs at the end of October and then starting as a Christmas gift to myself. I just had my 12th year of infection in August. There is a small chance it goes back to 1995, but I do not think it does. So, that is a long time of not being on meds.

Just checked temp again and now 103.1. I'm not throwing up and don't have diarrhea. I do feel a tad nauseous and get dizzy, when I get up. Everything tastes awful. I've not been sick, since 2008. Haven't heard of flu cases yet. Usually get vaccine in early October. If I call the doc, I'm sure they will say go to ER. Without knowing whether it is viral or bacteria, they can't just call in antibiotics. Would you be heading to the ER? I'm trying to not be a baby and stick it out, unless I start throwing up or temp goes much more over 103. Or, if I have any of those pleurisy pains I had before.

I would only go to the E.R. if a fever was sustained (meaning a fever reducer wasn't helping, and I mean more than a day) and over 104F. Have you even taken anything for this? And it's not even been 24 hours since it began so in my mind it's nothing unusual.

If it's just the flu then nothing is unusual here. Can't really comment about blood sugar but then I've never felt the need to check this at home. You already had a doctor look at you even if it was your brother's partner -- what did he tell you to do?

After my temp went over 104, we made our way to the ER. We were there 6 hours. The dx was pneumonia. Doc said radiologist said he saw something that looked like a small spot of pneumonia. He said even in neg folks, some are more prone to pneumonia, and more prone once you had it before.

Once again, my lungs sounded totally fine and clear--just like last time. Sent me home with Levaquin. I was actually a tad relieved. My anxiety was already making me worry they would come tell me something worse was going on--like every lab was crashed and they would have to keep me. Glad I didn't have to stay.

As I already said, I was already on the verge on taking the med plunge. I think this is my sign. I didn't start after getting very ill with pneumonia in 2008. But, I had decent labs. I don't want to end up in the hospital again. While I know the doc said this happens to neg folks, I have no doubt HIV is obviously the culprit. I quit smoking in 2008, which is a contributing factor. I am due for my 5 year pneumonia booster-- well December 4th will be five years. I guess that's just a coincidence.

Edited to add that they took blood cultures in these 4 hot sauce type glass bottles. I guess they will grow something from the cultures, to see if things are worse? I should have gotten that clear.

On the meds plunge, I was diagnosed quite late (CD4 at 130) so went straight into meds. They put me on the combination you mentioned (Truvada, Reyataz, Norvir) and I had some nausea in the first week or two and my stomach is variable (though I already had IBS, so my stomach's always variable). But the side effects haven't been that big a deal for me.

I'm off to the clinic tomorrow too get the results back of my 4-week bloods. Here's hoping the numbers are moving in the right direction :-)

I'm glad you went to the emergency room, though, I think I'd have gone just so that it wasn't making me more anxious about it. I hope you feel better soon, dude. *lots of hugs*

After my temp went over 104, we made our way to the ER. We were there 6 hours. The dx was pneumonia.

Ted,...

Glad to hear that you went to the ER. Sorry about the diagnosis, but it's good to get answers, especially when dealing with pneumonia. I only had pneumonia once, (and once is enough),.. and it totally destroyed me. This was also before I was on medication. I didn't realize you had pneumonia before in 2008.

I think it's time to seriously consider starting meds. I know it's never easy, but 12 years is a good run.

Hi Ted , I'm glad you are doing better . On the MEDS issue , I was on Truvada, Reyatz, and Norvir for years . It was a dreadfully awful combo for me to be on , my gizzards felt like they were being ripped out About 9 months ago I was switched to Prezista with the Norvir and Truvada . It's a 100% better combo for me

I can't say that I am convinced that being on HAART will prevent getting non-PCP pneumonia seeing as how his numbers have been what they are. But I do think being on HAART might be helpful for him from an anxiety perspective.

I'm glad you went to the ER. Hopefully you are feeling even a bit better now.

2 things:

1. If I start wondering whether I should see a doctor or go to an urgent care facility, I generally go. Always better safe than sorry.

2. Blood cultures are not at all unusual in your situation. You presented with a Fever of unknown origin, so they would be pretty standard tests. In my experience 95%+ of blood cultures end up negative.

Take you meds, eat some soup and get some sleep. Oh, and for god's sake -- don't worry about dieting while you have pneumonia.

I'm sorry to hear you have pneumonia, Ted. At least it's not PCP, but still it's serious and it's good you went to the ER and got help.

Logged

"Life in Lubbock, Texas, taught me two things: One is that God loves you and you're going to burn in hell. The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love." - Butch Hancock, Musician, The Flatlanders

Thanks everyone for the well wishes. I am feeling better than yesterday, but hoping the Levaquin takes care of it. I do hope even on HAART, that pneumonia won't be something I am just more prone to getting. I am not sure if you always need a really bad case to begin having lung damage. I have read a lot of damage comes from the immune response and inflammation. I will read that posted link about pneumonia. I still can't help but wonder whether being almost due for my 5 year booster played some role, or was a complete coincidence. Perhaps I should talk to the doc about whether I should move up my 5 year boosters to 4 years, or at least not waiting for the full 5 years. Seems like it couldn't hurt.

My brother posted on Facebook how I had pneumonia and for people to keep me in their thoughts. That was nice of him. But, I noticed many were asking how in the world someone my age had pneumonia. He also texted me, asking whether I was taking my HIV meds all the time and not missing doses. I've discussed before how HIV has been a topic he never asks me about. I was surprised he even brought it up. Brian said if he would talk to me about it, then he would know I wasn't on meds yet. So, I plan to try to use this to begin having some open dialog about it with him.

Besides being healthier, I do agree HAART will help with the anxiety, which also makes one healthier. I already had an appt with my HIV doc for Sept 30, so we could discuss meds, after I had met with the pharmacist counselor a month or so ago. I left the ER being told my labs were actually pretty good, despite a slightly elevated WBC. When we got home, I asked Brian whether anything was said about CD4. The doc woke me up. The doc was already in the room giving me the dx, when Brian returned from the bathroom. So, I will check with my HIV doc to see if he has the lab reports. The HIV clinic is at the same hospital. I suppose it would be nice to have a non-sick CD4, vl, and CD4% before starting meds, so I will have a decent idea where they were before starting.

104 is time to go to the ER if it goes any higher it can be dangerous. I'm not prone to fevers but the time I had one go to 106 I had walking pneumonia and had to go to the ER to get fluid via IV. This was around the time I tested poz. If you can't break a fever at 103 then get ready for the ER, fever is the body's way of telling you something is very wrong.

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Pray God you can copeI know you have a little life in you yet. I know you have a lot of strength left.

Am concerned for you. Just how sickly do you need to become before taking medication that will make you better?

Ted why aren't you on meds? I'm not sure that you have ever specifically said. I kinda assumed it was because your doctor hasn't offered to put you on them. Is that the case or have you been hesitant?

Either way, I don't know if being on meds would have prevented the pneumonia. I doubt anyone could give you a firm answer on that but it couldn't hurt right? I know I have felt better being on meds, I saw that you were considering Complera.

Ted why aren't you on meds? I'm not sure that you have ever specifically said.

I think Ted falls into that grey zone that Ann was once in. CD4's high enough and viral load low enough that it is a feasible decision not to commence HAART. It's not like there is an actual consensus for such patients, and personally I'd probably do the same thing if I was diagnosed with those numbers.

And I agree that being on HAART would possibly have a negligible effect on catching non-PCP pneumonia for the second time. Obviously if it was PCP this would be different. I get bronchitits every year even with 1700 cd4 count, I guess Theo catches infectious pneumonia easily. I'm not a doctor, but now that he's had this twice maybe he should consult a pulmonary specialist.

Yeah, I think Miss P sums it up. I had high CD4 counts and low vl results. Besides a sore throat maybe once a year, this is the first time I've been sick since 2008. Back in 2008, I think the recommendation was still at 350. Even not that long ago, I was reading articles where many believed there probably wasn't much benefit of starting above 500, except to be less infectious.

So, I never thought I was being reckless. I was getting regular labs. When the recommendations were moved to 500, I said I would definitely go by those recommendations, if I hadn't already started. I was weighing the pros and cons. I had chosen Truvada, Reyataz, and Norvir to start, when I started. I was reading articles how Truvada was showing to be more toxic to the kidneys in the real world, than what was seen in clinical trials. So, that was a factor, too. Will I create health issues, when there was no urgency? Am I doing more damage, even with low-level viral loads? That was the thinking. Although, I see a lower-dose version has been approved that is as effective, but will hopefully reduce the negative effects. I just kept thinking starting at higher counts would be something that you just know is right. You don't doubt it. I figured it would be like my friend deciding to get off pain meds. He just came to the decision that it was right for him, and there was no going back.

As David said, I've been reading how bacterial pneumonia is still often an issue, even in those on HAART and with high CD4 counts. I was just thinking the same, that I should see a pulmonary doc. I never had issues with chest colds, bronchitis, or anything like that all my life. I would think someone prone to lung infections would be at higher risk for pneumonia. And, I'm sure they are, but I guess I am too.

Oh, speaking of pain meds... After back surgery and MRIs showing my discs are getting worse and worse, I do take pain meds. I don't eat them like candy. I take them as prescribed and I never run out. I was wondering whether the breathing/cough suppression of the meds could play a role. Just something I thought about. I have noticed that I rarely cough.

The other thing I have wondered is that when I got it in 2008, I learned a family member had gone to the ER and was dx'd with it, at the same time I was in the hospital. Ok, 2 weeks ago, I was at a family dinner. The same family member came up and gave me a kiss on the cheek. He said he had just been in the hospital for some virus or something. He said he was still sick and probably shouldn't be there. That was Monday, Sept 9th. That following weekend is when I began to feel off. I was driving and my back was just killing me. I assumed it was back issues. Then, I end up in the ER the following weekend. That is less than 2 weeks from contact. I'm beginning to wonder if he isn't infecting me. That part of the family is always sick with something. It is literally something every month with them.

Well, the fever is gone--I think. I have been having back pain on the side of the lung infected. Not sure if that is just regular back pain (my discs are jacked up) or whether something else. Plural effusion does worry me, since that happened before. But, I have just one more Levaquin to take, and I would hope it would have knocked it out. I have had some blow outs today, which I think are due to the antibiotic. And, I did eat some cereal today. I have gotten to where dairy does not sit right with me. I can eat ice cream, yogurt, cheese, but milk gets me.

But, doing much, much better than last weekend. Thanks for asking. I hope this finds everyone doing well.

Glad to hear you are much improved. Hope everything clears up soon. Back pain and messed up disks are not fun. I have the same problem with milk. I substitute plain (unflavored) rice milk and add a splash of real milk to give it more of a creamy flavor. It's pretty good.

For those who have dealt with pneumonia, I have a question. What goes on in the lung after treatment? Is there still often lingering inflammation, that will usually take care of itself?

It has been almost exactly one month, since I went to the ER. I took my 5 day course of Levaquin, and everything seemed much improved. However, I've been having this pain in my left shoulder blade that wraps around the side to the front. Some sites discuss spleen enlargement as a cause for this kind of pain. But, pleurisy can also be at play. Since I have back problems, I could have some disc issue going on, or I injured the muscles. I went to my brother's last night for an adjustment. He's the chiropractor. His partner is an M.D. My brother was concerned it could be from swelling in the lung. His partner said he shouldn't scare me, and that it is probably a coincidence and muscle injury. They both agreed my left shoulder blade was jacked up and not symmetrical to the other. Something is going on.

So far, I haven't been out of breath. We are due to leave tomorrow for a long weekend to the mountains. This worries me getting on the road to rural areas. The recommendation for a follow-up chest x-ray is 8 weeks--it has been 4. Many now think a follow up is not necessary, unless there are still issues. I have an appt with a pulmonary doc in early November.

I am just wondering whether the pneumonia can be healed, while inflammation still present for several weeks-- not necessarily meaning the pneumonia is returning? Could this be scarring of the lungs that the body is responding to? I am hoping it is just muscular or disc related. Since we have a doc in the family, he could prescribe another course of Levaquin. But, with the issues with over use of antibiotics, I'm not sure whether to go that route.

For those who have dealt with pneumonia, I have a question. What goes on in the lung after treatment? Is there still often lingering inflammation, that will usually take care of itself?

It has been almost exactly one month, since I went to the ER. I took my 5 day course of Levaquin, and everything seemed much improved. However, I've been having this pain in my left shoulder blade that wraps around the side to the front. Some sites discuss spleen enlargement as a cause for this kind of pain. But, pleurisy can also be at play. Since I have back problems, I could have some disc issue going on, or I injured the muscles. I went to my brother's last night for an adjustment. He's the chiropractor. His partner is an M.D. My brother was concerned it could be from swelling in the lung. His partner said he shouldn't scare me, and that it is probably a coincidence and muscle injury. They both agreed my left shoulder blade was jacked up and not symmetrical to the other. Something is going on.

So far, I haven't been out of breath. We are due to leave tomorrow for a long weekend to the mountains. This worries me getting on the road to rural areas. The recommendation for a follow-up chest x-ray is 8 weeks--it has been 4. Many now think a follow up is not necessary, unless there are still issues. I have an appt with a pulmonary doc in early November.

I am just wondering whether the pneumonia can be healed, while inflammation still present for several weeks-- not necessarily meaning the pneumonia is returning? Could this be scarring of the lungs that the body is responding to? I am hoping it is just muscular or disc related. Since we have a doc in the family, he could prescribe another course of Levaquin. But, with the issues with over use of antibiotics, I'm not sure whether to go that route.

Although, I suppose the coughing that can accompany pneumonia certainly could strain a muscle, you could always go to an urgent care facility -- once you give them your recent history, they will likely do an x-ray. This should give you some peace of mind for your trip.

From what I have been told and my own experience the lungs are Fantastic at recovery / healing and I think compensating by that I mean being very co-op in working with ones will to find ways around under and over problems. I have spent weeks unable to walk and talk after being bedridden with oxygen help , was told that the condition off the lungs would not improve .it did , they did , oh how some wish for the old days when I had to rest for hours due to 5 Min's off conversation lying down.

I do have permanent damage , I still smoke strong tobacco , I am working towards not smoking any strong tobacco for most off the year. When the odds are well against me and I feel the time is near I hope to enjoy all the tobacco and hash I can consume.

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Ted...had pneumonia 3 times 2 in Hospital ( 3 weeks , then one week) 1 treated at home with Prescription meds found out there are so many types of PNeu... first two "viral" type no real "cure" just good treatment that send it to hiding ( kind of like shingle for the lung) other type Bacterial .. can be cured with meds Once you got a Hospital type case need to always be very aware of recurrance ... been more than 20 yrs since first Hospital case , 8 yrs since second hospital case.... 2 yrs for last case...

all I can say is be aware dont assume you just have a "cough" get checked as soon as you notice anything

Thanks for the replies and your experiences. I ended up getting seen earlier tonight, with blood work and a chest X-ray. They said no infection and that the pneumonia is looking much better from when I went to the ER almost a month ago. From what I understood, there is still a small spot there, but much better than before. They said pneumonia often just takes time to fully disappear.

The doc believed it is probably muscular-- injured something and just a coincidence on the same side. He did say it is possible there is still some lingering inflammation from the pneumonia. But, oxygen levels were like 98% and all blood work fine. He said it is always good to play it safe, than just dismissing something. He said it was good I had it checked and that it should ease my mind about something going on while on our trip.

Thanks for the replies and your experiences. I ended up getting seen earlier tonight, with blood work and a chest X-ray. They said no infection and that the pneumonia is looking much better from when I went to the ER almost a month ago. From what I understood, there is still a small spot there, but much better than before. They said pneumonia often just takes time to fully disappear.

The doc believed it is probably muscular-- injured something and just a coincidence on the same side. He did say it is possible there is still some lingering inflammation from the pneumonia. But, oxygen levels were like 98% and all blood work fine. He said it is always good to play it safe, than just dismissing something. He said it was good I had it checked and that it should ease my mind about something going on while on our trip.

Ted,

I'm glad you got it checked and things look good. Now you can enjoy your weekend away.

Honestly, if one is wondering whether or not to get something checked, one probably should. If for no other reason than peace of mind. I have read too many stories of someone who "didn't feel right", ignoring it and ending up with a serious emergency or death.